So, Whaddya Wanna Know?

I recently joined the Caregiving listserv group on the AARP site (you can find it on the bottom of the right-hand column on this page: http://www.aarp.org/relationships/caregiving/), and one of the current topics is “What do you wish you had known when you first started caregiving?” I added some brief remarks to the thread a couple days ago, but the question has continued to linger ever since. Honestly, I almost think I’ve been better off going into this in ignorance.

Ignorance is, I think, the way many of us first confront the need of a loved one for extra care. I know in my case, my sisters and I had a certain number of hand-wringing conversations, but they inevitably gave way to another glass of wine and our respective takes on the previous week’s American Idol performances. But, when reality crashed its way through my resistance, in the form of a phone call from an ER nurse 1,200 miles away, action was suddenly forced. If I had known then what I know now, my reaction to move Dad in with me might have played itself out differently. And, maybe, like an early 20-something who suddenly finds himself a parent, I’ve been better off approaching new challenges blindly, rather than anticipating hurdles that haven’t yet arrived.

My motivation in moving him out here was simple – I didn’t want him 1,200 miles away from anyone who cared about him if something more serious happened, making the option of moving no longer an option. We’d figure out the details once he got here, but, the important thing was getting him settled safely somewhere closer to where others could help. Mostly because of inertia, I suppose, a first-floor bedroom became his new home.

If you’d asked me then what I wanted to know, in the whirlwind that was that first couple of months, I probably would have focused on specific, process-oriented queries. How does Medicare work? Why do I have to upset Dad’s insurance applecart just because he’s crossing state lines? Is my house safe? I’ve since learned that these bureaucratic annoyances are like little buzzing gnats. The day-in, day-out emotional stresses are the swarming mosquitoes that can suck the life force out of you, leaving you anemic and covered in welts.

So, I guess what I wished I’d known are some basic strategies for living – useful at every stage of life, but especially helpful in both acute and chronic crises. The thing is, I think I would have thought many of the lessons to be little more than new age greeting-card homilies before this all began. For what it’s worth, I pass on a short list of life rules by which I now try to live, and that could have been more helpful than any senior-resources checklist – it would be interesting to hear how others might add to these ideas, as well.

Remember to breathe. You’re not going to be perfect. No one human being can keep another human being alive by sheer willpower, though you will try. Stepping back from that ego-driven desire to control may give room for a solution – or, at least, acceptance – to enter your consciousness.

Pick a role. Think of the ways you turn to different people in your own life – who you call for practical advice, who you reach out to when you need a dry shoulder, who you send snarky gossip to on Facebook, who you ask out to a movie when you just need to get out of the house. No one person can be all those people, and you can’t be all those people to your parent, either. For my Dad, I’m the practical minder. My two sisters who live across the country are his major morale boosters. So, I’m not always making him happy – but his face always lights up when one of my sisters calls, and I’m totally o.k. with that. My sisters appreciate the work I do, I appreciate the joy they bring him, and we all do our part to keep Dad going.

Let others have their roles, too. A not-always-obvious corollary to the point above. If you’re the one managing the prescriptions and doctors’ appointments, changing the sheets and washing the dishes, it can sting a bit to hear how wonderful it is that another sibling makes a weekly phone call. That inner, nagging “what about me?” voice can start making its way out of your mouth faster than you can say, “you always liked him/her better.” If you take a step back, though, maybe you can see just how wonderful that daily/weekly/monthly call really is. Does your parent smile? Then the caller is playing an important role, and you’ve gotten 10 or 20 or 30 minutes of respite. Sit down, relax, and let someone else take center stage for a few minutes.

Maintain relationships. Remember, you and your other family members still will be family once your parent has passed, and this experience can either bring you closer together or tear you apart. To primary caregivers: understand that others may not know you need help, or may feel shut out by your own take-control nature. To other family members: consider the stress that might be behind a sharp comment, and make an effort to listen, first, before stepping in with a surefire solution.

Remember the life you will have once this chapter has ended. This is a lesson I’m just trying to learn now. When your parent dies, you will, most likely, still be alive. What do you want that life to be? Really, this is the question you should be asking yourself at the beginning of the process, and your answer – not the swirling gnats and blood-sucking mosquitoes – should be your guide along the way. One of my sisters gave me very good, and difficult, advice this spring: No single person’s life is worth the life of another. People give up jobs, abandon relationships and ignore their own physical and mental health, all to the end of maintaining the life of a loved one, and are left broke and broken when that loved one dies. Like the airlines always tell us just before takeoff – you’ve got to put on your own air mask first, if you’re going to be any use to others who might need help adjusting their own elastic straps.

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6 Responses to “So, Whaddya Wanna Know?”

Well said Chuck. Before I started to read your answer, mine was better not to know. You would have scared to death, or just not believed what you heard.
I spent many years in this caregiver/teacher situation and the gradual acceptance of things is the best way.
And of course the last paragraph is the most important. Take care of yourself.
Love you, sally

It has always seemed to me that there is no “preparing” for this role of caregiver no matter what the experts say we should be doing to get ready. For one thing, how do you really know what to prepare for until it starts to happen? There are so many variations on the theme of being and caring for an aging parent.

Yet, it does seem to me that one of the gifts of being a caregiver is ending up somewhat better prepared for my own aging. I do know quite a bit about Medicare now, and about housing and aging in place options. One thing that I really hope that I have learned is to reach out for help and advice from some of those experts when I’m stumped.

Great site!
On the driving situation, can you disable the car? We had the same situation with my mom. She is pretty savvy so we pulled the fuse on the starter/ignition. When we wanted to go somewhere in her car we just plugged it back in. You could also just disconnect the battery.

No, we live in a very rural area. So, no she did not have AAA as an option. You could also replace the key on his keyring with a “dummy” key. You could also get a steering wheel lock at an auto supply store. If you don’t want your dad driving, you might get the AAA folks involved. They mnight be willing to play along with the rouse. You could consider cancelling AAA. If he is not driving, why pay for it. We have gotten really good at “tricking” my mom with various creative ideas.